Prognostic awareness and communication preferences among caregivers of patients with malignant glioma

Applebaum, Allison J.; Buda, Kara; Kryza‐Lacombe, Maria; Buthorn, Justin J.; Walker, R; Shaffer, Kelly M.; D’Agostino, Thomas A.; Diamond, Eli L.

doi:10.1002/pon.4581

Cited by 36 publications

(69 citation statements)

References 33 publications

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“… 41 Providers may be reluctant to share distressing information, leading to a lack of prognostic awareness. 42 , 43 When the patient’s health declines, patients and families may feel unprepared. Patients and care partners report a hunger for information, including about prognosis.…”

Section: Discussionmentioning

confidence: 99%

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Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Salmi

Lum

Hayden

et al. 2020

Neuro-Oncology Practice

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Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely upon relationships to meet evolving patient needs. Conclusions In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

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Section: Discussionmentioning

confidence: 99%

“…Patients and care partners report a hunger for information, including about prognosis. 42 , 43 This lack of effective information exchange may drive patients and families to seek access to scientific publications on their own, as evidenced by comments shared in the tweet chats.…”

Section: Discussionmentioning

confidence: 99%

Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Salmi

Lum

Hayden

et al. 2020

Neuro-Oncology Practice

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“…Where a paper considered the views of HCPs working across multiple neurological conditions (rather than a specific condition, for example, in neurorehabilitation), these papers were considered suitable for inclusion, as it was deemed that the views of these professionals were relevant to our research question. Previous authors of systematic reviews aiming to identify papers relating to the provision of recovery information and breaking bad news have identified challenges in keyword searching, resulting from the variety of language used in this field, 15 for example, "prognostic awareness" 16 or "difficult conversations." 17 We aimed to be as comprehensive as possible in our selection of keywords and, to ensure literature saturation, employed backwards and forwards citation searching of included articles.…”

Section: Methodsmentioning

confidence: 99%

Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature

et al. 2021

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ObjectiveTo review and synthesise qualitative literature relating to the views, perceptions and experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery; as well as the views and experiences of healthcare professionals involved in delivering this information.DesignSystematic review of qualitative studies.Data sourcesMEDLINE, Embase, AMED, CINAHL, PsycINFO, Web of Science and the Cochrane library were searched from their inception to July 2019.Data extraction and synthesisTwo reviewers extracted data from the included studies and assessed quality using an established tool. Thematic synthesis was used to synthesise the findings of included studies.ResultsSearches yielded 9105 titles, with 145 retained for full-text screening. Twenty-eight studies (30 papers) from eight countries were included. Inductive analysis resulted in 11 descriptive themes, from which 5 analytical themes were generated: the right information at the right time; managing expectations; it’s not what you say, it’s how you say it; learning how to talk about recovery and manage emotions; the context of uncertainty.ConclusionsOur findings highlight the inherent challenges in talking about recovery in an emotional context, where breaking bad news is a key feature. Future interventions should focus on preparing staff to meet patients’ and families’ information needs, as well as ensuring they have the skills to discuss potential recovery and break bad news compassionately and share the uncertain trajectory characteristic of acquired neurological conditions. An agreed team-based approach to talking about recovery is recommended to ensure consistency and improve the experiences of patients and their families.

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“…Across this review, studies consistently pointed to distress emerging early in the disease course and remaining unmet by healthcare providers. Also, in relation to prognostic awareness, while patients are often unaware of their life expectancy (27), caregivers can find themselves in the middle of knowing the importance of this information and wanting to protect their loved one from this oftendevastating information (28).…”

Section: The Experience Of Caregivers Of Neuro-oncology Patients Across the Disease Trajectorymentioning

confidence: 99%

Bereavement care for family caregivers of neuro-oncology patients

Morris¹,

Sannes²

2021

Ann Palliat Med

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Bereavement care is best conceptualized as a preventive model of care. It is an integral component of palliative care where support for the family begins at the time of diagnosis and continues beyond the death of the patient. Even though grief is a normal response to loss, the death of a loved one is believed to be the most powerful stressor in everyday life with the potential to cause great distress in all those closely associated with the deceased. In neuro-oncology, where patients often face limited prognoses, knowledge about approaches to bereavement support is particularly important. Despite this, research into the experience of bereaved caregivers is limited. As such, an opportunity exists to identify ways to help family caregivers not only cope with the death of their loved one but also to help families prepare for the death ahead of time. In this article, we offer guidelines about how best to support family caregivers before and after the death of the patient, drawing on the palliative care and bereavement literature.

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Prognostic awareness and communication preferences among caregivers of patients with malignant glioma

Cited by 36 publications

References 33 publications

Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature

Bereavement care for family caregivers of neuro-oncology patients

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